Asthma sucks

So i saw my PCP on friday. I haven’t been there in quite awhile, so i explained how this year it has been hard to breathe. Last year i carried boxes up the hill while moving in and i was fine. It was hot but i was ok. This year however i walk to the mailbox and i’m dying. I need my inhaler. I had tried Symbicort over the winter and it wasn’t helping. I did however have some advair so i’ve been using that in the mornings and its been, ok. Don’t get me wrong i walk to the mailbox and i still cant breathe but just sitting here it doesn’t feel like a weight on my chest like it had.

She decided to try me on Singulair. First dose on friday. Saturday i was lost. Dazed and confused. No energy and i had planned on doing about 100 things. Nope no can do. I lied there watching YouTube all day. Went outside sat in the yard, then back for more youtube. Was it really the Singulair? Or had ai taken too much medical marijuana because my back was bothering me?

Here it is sunday evening and i think i am feeling better. My chest is still a little heavy but the information with the medicine says it doesn’t work immediately so….. also, I didn’t need the weed today. We will see.

what a week its been

so.. the week started of just fine, then tuesday night i finish work prepare dinner but not cook it. have happy hour with my team, then i have 20 minutes before a meeting for my volunteer stuff. i cook and jump on the pc. turn off the camera so i may eat. food was awesome conversation great, i love these people for what we do. fighting for patients rights, changing insurance laws, you know, fun stuff. while on the call i get a twitter dm from someone who has been wanting to get started with the national psoriasis foundation for awhile. we chat for awhile, then im so tired i sit down and fall asleep. the time? 7.55pm. at 2.30am i awake, goto the bathroom and lie back down, cant sleep. toss, turn etc.5am? hell i have to get up in 20 so yes ill make coffee. as im getting coffee i get my mornng round of meds and….. realize i forgot last nights. unfortunately i take 4 blood pressure pills a day. 2 morning and 2 at night. i take everything at 5….

ive done this a couple times in the past, rushing out of the house for a 6am appointment an hour away, ive never forgotten my evening meds. doesnt matter, im affected the same way, my head in the clouds, spinning no energy, cant think straight. i push my way through. then i lay there until after 11pm cant fall asleep. i thought all was well when i woke at 520….

i fall asleep thursday night at about 10, then im up at 2.12. bathroom, yes ok. i lay there, i lay there, my head starts pounding, yes now its headache time. fioricet and coffee time. That sort of held my headache at bay, it didn’t get worse, but it didnt get better either.

so friday morning i know this has to end, i placed an order at the dispensary and planed for a noon pickup. i was so tired i couldve fallen asleep but i made it there and back, and then dozed off for about 60-90 minutes. friday night i triple checked that i took my meds, then popped a capsule and took some tincture. went out like a light until 4am.

Now here it is sunday and im starting to feel more normal. Its been rough, how was your week?

Everyone has a story

Since becoming an advocate i have participated in many events. Most where there are other psoriatic patients, however i have participated in advisory board panels and it seems that everytime i do the ones putting on the event share their stories as well. They may not have Psoriasis or Psoriatic Arthritis, like i do, however they either have a family member with it or someone is battling another auto-immune issue or mental health etc. It never fails, everyone shares their stories and that opens the floor before we start sharing our personal experiences. Ive done this many times but this last meeting really made me think. Either everyone in the world is affected by something either through themselves or family, or because of the illnesses in their family they got into the fields they are in, helping patients. This kept going through my head all through the meeting, and after. I keep thinking about it because i believe its the former.

Think about it. Ill bet you know someone with some form of health issues. It could be depression, cancer, alzheimer’s, mobility issues etc. Yes everyone has been touched by something.

So… The next time you meet someone remember they too probably have a story to tell, they too maybe going through something as well.

Its spring, i think…..

So we finally had some good weather, 70-80F. No pain, unless i stand for a long time, all seems to be going well. I went through a bunch of things, decided to do some spring cleaning there were 2 boxes to store, 2 to give away so far, nice. I carried them to the garage, put the air conditioner in the window, then puttered around the house a bit more, and helped my landlord who lives next door (we bolted the power line back to the side of his house) . Some truck was driving down the street you know the ones with the canvas top? He had the top, with the metal bar UP. Ripped the power and cable lines and the power meter right off the house. This happened Thursday at 2:03 PM. I know the time because i jumped on a WebEX meeting, said hello and my screen went blank.

Utility company was out here and power was back on sometime between 4 and 5. Incredible they had a new line up meter mounted and power restored. I was already on another call, this one by phone, as far as internet? We are scheduled for Saturday…. Hence the cleaning etc no internet no life right? LOL

Ok internet was restored just after 4pm nice. i decided at that point to get online and rest a bit.

I fell asleep sometime just after 10pm. I woke at 330am. I had to goto the bathroom but it was 4:19 before i got off the couch. Thats where i had fallen asleep and now my back hurts like hell. Knowing full well theres no way i can lie back down i put the coffee on, did my business then slathered some CBD cream on my back.

Had coffee, more coffee and bacon and eggs, and guess what? Pain is gone. I swear i love this stuff. I was going to take a gelcap or some tincture but the cream did it. Ive tried a number of other brands that did nothing for me but this ones gold. Please check it out here if you are interested. http://bit.ly/2BRqYDr

Full disclaimer that is my affiliate link. i will get a small percentage of your purchase if you buy something today. I would not send you there if i didnt fully believe in the product or if it didnt work for me.

So… How is your spring going?

A long time ago…

When i was a teen i wasn’t interested in working on cars. I wasnt interested in anything but girls and computers. Since i wasnt turning a wrench, wasnt building houses, chopping wood etc i didnt have many of the calluses that many men my age had. All the ladies told me how soft my hands were, yes i was a geek, always on the computer.

In 2005 i was 39 and I was starting to get Psoriasis. In 2007 my hands looked like they had an argument with a cheese grater, and lost. Below is a pic when it was about 1000 times better.

My hands were destroyed. My life changed forever. I thought i would never be the same.

I have since met many other patients advocates i am now clear but i hadnt thought of this until this last April. I was at Healthevoices when another Psoriasis advocate was walking by and we held hands for a second. She then told me i had the softest hands.

She made my day, my month, my year.

Even though Psoriasis has taken so much from me, hurt me so bad, i finally feel like i am winning this battle.

Most painful year of my life….

While its true ive encountered some bad times in my life, but this past winter has beyond a doubt been the most painful year. Why? I dont know, it wasnt cold at all. It hardly snowed. So why?

I understand when it gets really cold and dry in the winter that my joints hurt, but it didnt get that cold. I dont think it was all so dry, but my right hand hurt throughout the winter. It started early on, in the winter. My fingers were throbbing. I put on my thermoskin gloves. Then another day i covered my hand with diclofenac gel. An hour later i did it again, then put the gloves back on. On top of this i took pain pills without knowing that i wasnt supposed to with the gel. Luckily it didnt hurt me but the pain never went away.

Working From Home

Unless you’ve been living under a rock, you pretty much know that americas workforce is working from home minus the essential people. Medical staff, grocery stores, truckers, police, fire, i hope im not missing anyone if i am please forgive me, the rest of the people are being laid off or simply being paid to sit at home to try to stop the spread of Covid-19.

While i know this will help a bit i know it wont completely stop it as there are too many idiots who think they wont get it, its a cold or a conspiracy thing.

I know this isnt typically what i write about but hey its on my mind why not.. Ok enough of the intro and onto the show.

Monday: I setup my laptop at the kitchen table and had a beautiful view of the street and the farm across the street. The sun was shining in and felt, oh so good. Then the sun was shining on the table and i had to put a towel there as it was blinding. Next close the blinds. Not sure when it happened but i started getting a headache maybe from the sun… Later as the sun was overhead i could open everything back up. This setup didn’t work as my kitchen chair is wooden and uncomfortable to sit on for 8 hours. I threw a pillow on it, that helped a little but now enough.

Tuesday: I decided to use my mobile computer cart. I disconnected the desktop and connected my work laptop. I sat on my comfortable Ikea poang. This was much better but i had to sit forward or reach for the keyboard and mouse. Also im using a 32″ TV as a monitor and it was seriously bothering my eyes.

Wednesday: I setup the cart in front of the couch. Much much better. I noted that i may have to visit the office and pickup a monitor this is still bothering my eyes. I am comfortable on the couch, i put the heating pad on my lower back and yes this is better. BOOM! My computer crashed and rebooted. Whats this? The screen looks better? AH! Dummy i said, i need to start the laptop while connected so it picks up the proper resolution. Gotchya wont do that again. 🙂

Thursday: Feeling a little lazy and tired today. Im not going to closeup the couchbed ill just sit at the edge and work. At lunch i fixed it because my back started really hurting trying to sit up that long. Damn. Everything else is good and my headache is finally starting to subside.

Friday: Oh yes. I think i figured this all out everything is working well. Its been a very long week though. My migraine is gone, im comfy on the couch, and to add to it work has quieted down a little.

Friday evening I had some groceries ordered from an online service i use and they cancelled. I was really looking forward to the fresh fruit and veggies i get, so i looked and my local grocery store had a spot open up for pickup. I placed my order quickly. Why was i waiting for pickup/delivery spots? Because I am #immunocompromised and my life counts. #HighRiskCovid19 so I dare not take chances.

So ive actually been trying to order groceries online. they dont have any open slots for pickup or delivery. so since i use https://misfitsmarket.com heres a code if you want COOKWME-SY4GZN and https://imperfectfoods.com code: http://imprfct.us/v/jim_316 the 1st save you 25$ (i think) and the 2nd 10$ the 2nd has more options. These links will save us both money. Please if you are going to check them out do us both a favor.

UGH! – stop it now!

The news is full of everything about corona/covid-19. Sooooooo many people who have Psoriasis/Psoriatic Arthritis and are on biologics keep asking, ‘should i stay on my meds?’

My answer… my thoughts and i heard this from a doctor.

My thoughts? Yes definitely. I have both PsO and PsA. Without the medicine it attacks the joints and i can plan on an early retirement and being unable to walk. No thanks. Treat it naturally? Im not taking chances i like to walk.

What a doctor told me. On a scale of 1 -10 10 being the best immune system in the world, superhuman if you will, and 1 being none (think of ‘the boy in the plastic bubble’ i liked that movie) a normal persons immune system is a 5. Being Psoriatic means im at an 8 or a 9. So taking treatment only knocks it down to a 6 or a 7, my immune system is so superior. Ive had the flu, for a couple hours. Ive had colds that didnt last a day. I cut myself and its gone the next day.

So… Why would i stop my medication? I wont willingly.

What will i do? I will eat right, wash my hands properly, and take my vitamins as i always do, and in addition Ill be careful, and self quarantine.

Please be safe dont shake hands touch your face and sneeze on people. Dont travel unless absolutely necessary. Dont have house parties. Just plain dont be stupid.

A quick update

I have started writing for Health-Union.com. I will be posting both on PlaquePsoriasis.com and Psoriatic-Arthritis.com. Ive written 2 articles so far and you can find them here https://psoriatic-arthritis.com/author/aWildandFlakyGuy/ I plan to update my blog and when i write for the other sites, ill be linking to them so you wont miss anything, plus i want to update my blog to show where i can be found what im doing etc. Unfortunately i had to move in August and just after finding out the company i started here 10 years ago , and it will be going out of business. Its extremely depressing watching your friends (actually these people are more like family) leaving constantly for the last 6 months.